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This FAQ section contains information on:
Nutritional concerns
Under Help for symptoms - supportive treatment, you mention the importance of a high protein diet and vitamin supplements. Since following this advice I have been feeling much better. But I wonder if you might want to amend your recommendation of supplementing with niacin to supplementing with niacinamide. Supplemental niacin causes body flushing (something we with CS certainly don't need), whereas niacinamide does not cause a flush.
Niacin synthesis is deficient in carcinoid syndrome because of metabolic diversion of its precursor, tryptophan, to form serotonin. In some untreated individuals this can even lead to pellagra. Hence the recommendation for niacin supplementation. Niacin supplementation (in the nicotinic acid form) of up to 10 times the RDAnswer: (recommended dietary allowances which range from 15-20 mg/day to prevent pellagra), i.e., up to 200 mg per day, does usually not cause flushing or other side effects. Megadoses of nicotinic acid (100 mg - 3 g), which are sometimes given to people with hypercholesterolemia, on the other hand, have well-documented side effects of flushing, hyperuricemia, abnormalities in liver function, and occasionally hyperglycemia. Not a very good idea for carcinoids. The purpose for supplementation in carcinoids is to prevent pellagra not hypercholesterolemia, therefore lower levels of niacin intake is prudent (in either the acid or amide form). Megadoses of nicotineamide (as well as other water-soluble vitamins) may also have equally detrimental effects. Since very little documentation exists about the toxicity of large doses of this form (except in mice), it is recommended to within close proximity of the RDA:s. The statements regarding various treatment options on our web page are very general, on purpose, since they are not meant to be used as self-treatment unsupervised by a physician or, in the case of nutrition, by a trained professional, but rather informational as to most available treatment today. Therefore, an amendment to this statement cannot be made.
Do you have any dietary restrictions for your patients, other than during the 5-HIAA test?
No. Bananas and other serotonin containing food need only be avoided when collecting urine for 5HIAA testing. Tumors make their own serotonin independent of dietary sources. See page for how to prepare for the urine 5-HIAA test.
Do you believe that foods containing xanthines or theobromine, such as coffee, interfere with Sandostatin?
Xanthines and theobromines as well as various foods and wines contain substances that are provocative for carcinoid crisis and hence can interfere with the effectiveness of Sandostatin. I do agree with Dr. Woltering in recommending carcinoid patients avoid these agents.
Have you ever had patients report getting diarrhea from drinking coffee or tea?
Occasionally patients get diarrhea from coffee, but it is uncommon.
What about ingesting serotonin-containing foods such as bananas? If a person can tolerate them, are they risking their health by eating serotonin-containing foods? What about fats - if red meat is tolerate, is it okay to eat? Should carcinoid patients take niacin? If so, how much and how often? Does it cause any side effects?
The only reason for a carcinoid patient to eat a low fat diet would be to reduce steatorrhea (fat-containing diarrhea) if they have malabsorption due to short bowel syndrome or as a side effect of Sandostatin. If fat malabsorption is present or even suggested, then I treat with pancreatic enzymes. I encourage a high protein diet and that includes lean meat (beef, pork and lamb all have lean parts that would fall into this category). Tryptophan normally is the only raw material from which protein and niacin are formed and only a little goes to make serotonin, but in an active carcinoid making lots of serotonin, tryptophan is diverted to this use and protein and niacin synthesis suffer. The nutritional deficiency disease pellagra results from niacin deficiency. Diarrhea is one symptom of pellagra. All carcinoid syndrome patients have subnormal blood levels of tryptophan, an evidence of its depletion by being diverted to make large amounts of serotonin. Hence Niacin deficiency can occur. Taking Niacin in low doses prevents this; high doses are not necessary and can cause flushing. Tryptophan is obtained only via ingested food, particularly meat.
What about other vitamin or dietary supplements?
I do endorse a multiple vitamin supplement and all patients with carcinoid syndrome should take low doses of niacin to prevent subclinical pellagra.
Is food intolerance very patient-independent?
Food tolerances are highly individual and not necessarily related to carcinoid.
Do you prescribe pancreatic enzyme replacements and if so, how much and how often?
Pancreatic enzyme replacement varies from 1-3 Viokase tablets with each meal and at bedtime, or 1-2 Creon or Pancrease capsules taken with each meal and at bedtime.
What about alcohol? What forms should be avoided and why?
All alcohol should be avoided because of its ability to trigger carcinoid crisis.
What are the dietary recommendations for a patient with Carcinoid of the liver?
Other than a well-rounded diet supplemented by the standard one-a-day vitamin; there is no recognized specific dietary treatment for metastatic carcinoid in the liver if liver failure or carcinoid syndrome are not present. If a significant degree of liver function impairment is present, a diet used for any cause of liver failure (high carbohydrate, low protein and fat) is indicated along with standard vitamins and extra fat-soluble vitamins (A, D and E). if carcinoid syndrome is present, low does supplements of Niacin and a high protein diet are advised.
50 mg of Niacin in my multi-vitamin was enough to cause me to flush within one to two hours of taking the supplement. Since switching to a niacinamide supplement, I have not had any more supplement. Should I take niacin or niacinamide?
Low does of Niacin (25 mg twice a day after meals) should not cause flushing, is sufficient, and is easily metabolized. However, if you are hypersensitive, you can take ½ (81 mg) of a pediatric aspirin just before each Niacin does to prevent flushing or else do use Niacinamide. The mechanism of Niacin flush is quite different from, and unrelated to, that of carcinoid syndrome.
Could you give me brief description of Creon and Pancrease, and the benefits of each?
Thank you for your help.
They are both pancreatic extracts of animal active origin mode by different manufacturers and are roughly equal in effectiveness. They come in several strengths and each include lipase, amylase and protease. ( enzymes that break down fats, carbohydrates and protein). They help the digestion ( and thereby ) of fats, carbohydrates and protein. they help people with conditions having deficiency of pancreatic secretions of these digestive enzymes such as; partial pancreatectomy surgery, post gastrectomy bypass surgery, chronic pancreatitis, cystic fibrosis, short bowel syndrome, various diarrheal diseases with rapid intestinal transit (carcinoid syndrome) and suppression of pancreatic function which often occur as a side effect of Sandostatin treatment.
PsycHological issues
Is Zoloft an acceptable anti-depressant for carcinoid patients ? If not, what would be recommended? If no depression is present what could be used for irritability caused by Interferon?
Zoloft is OK for patients without Carcinoid Syndrome but not those who have it. They are better are better treated with Elavil or Nortryptyline. Low dose Atarax might help Alfa interferon induced irritability.
Exercise
What about exercise? Doesn't it bring out more hormones released from the tumors, thereby exacerbating symptoms? Is this dangerous?
Mild exercise short of being stressful is desirable and not harmful.
Is there any contra-indication for Carcinoid patients regarding massage by a physical therapist?
Massage is OK for carcinoid patients as long as the massage is not done over the tumor ( i.e. the liver area or the abdomen it that is where the tumor/s are)Also physical activity of non-violent type such as walking, swimming and exercising ( not heavy weight lifting or contact sports) are good for noids.
If a person wants to exercise, should he/she take an extra shot of Sandostatin beforehand? Doesn't stress bring on symptoms?
An extra shot of Sandostatin before nonstressful exercise is unnecessary but should be taken before known stress of either physical (surgery, dental work) or emotional type (IRS audit, unpleasant court appearance, funeral, etc.).
alternative treatments
My mother has been taking nutmeg, one teaspoon three times a day (fresh, ground) to help with her diarrhea. It seems to work. She thinks it makes her mouth very try. Are there any possible side effects of using nutmeg that you know of?
The use of nutmeg is an old folk remedy originating in the middle ages in Europe. Centuries of anecdotal observation and more recent experience in carcinoid patients under medical care on nutmeg for at least several years indicates no apparent side effects from the dose she is taking.
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